....to crack up right about .... NOW

[HorribleDay]

I am a woman on the edge right about now. DS is 14 months.

• FIL has cancer. My MIL died of the same cancer in July 2011. We nursed her at home because local hospice had no beds (for 5 days) until it was too late to move her. Very traumatic and horrific to watch (tho proud of doing it). FIL end stage now (were told at Christmas he had a few days so really glad we've had the extra time). He's in said local hospice, for symptom control. He's apparently got anywhere between a few days and who knows how long left, but is confused (brain secondaries), chest rattling (lung primary), breathless, banging headaches not controlled with codiene, extreme dizziness and can't walk without falling. It appears he may be discharged from the hospice this week as he's 'not got only a few days yet', with the plan to readmit when he deteriorates further (to what, unconsciousness???).

• AIBU no. 1 - to want FIL to stay in the hospice until the end, no matter how long it takes, so we don't have the trauma a mere 7 months on of caring for him until death at home?

• My nan has a recent diagnosis of dementia. MH services won't take responsilibty for her care because they say it's social care needs (food, prompting with meds, reminding not to go and walk in the local secluded woods alone, not to let strangers in who pitch up on front door for 'a drink' etc etc). Social Services won't take responsibility for her care becasue a. she can wash herself (this seems to be their only criteria...) and b. it's the MH team's problem.

• AIBU no. 2 - to want SOMEONE to HELP me and my mum, who has major physical disabilities, to support my Nan at home so she doesn't need a care home (at vastly greater cost) and what can I do with the service buck passing??

• My mum is about 6 stone overweight, smoker, and has a hernia op booked in 4 days (urgent referral).

• AIBU no. 3 - to be petrified she's going to die on the operating table?

And finally, thanks for sticking with me, AIBU no. 4 - to crack up right now? I work FT, as does DH, and we have a 14 month old DS who is amazing - we share childcare so one of us always has DS. Which makes all of this harder to cope with. No healthy family nearby (all around 200 miles away). DH is struggling to cope with the loss of his beloved mother (as am I) and the imminent loss of his beloved father. I feel like I'm trying to hold everyone together, and was hideously ill last week with antibiotics for an abscess that I am sure is stress related.

Apologies for the mammoth post and several spurious AIBU - I don't know what to do bar sit in a heap and cry at the moment. And then I will pick myself up and carry on....

Birds - I have asked, both local SS and local OA CMHT, who she is under for assessment of dementia. I've spent hours on phone to SS who keep saying 'well, she can dress herself so nothing we can offer'. Last phone call was told that 'it's the MH team's problem' - yes 'it' not 'she'. MH team are great but limited in what they can arrange re her personal safety (falls alarm) and meals, medicines etc - needs a daily carer for these things, but SS say their 'only' criteria is washing and dressing. SS have been nothing but obstructive, Inc when I told them it was now an adult protection issue, and when I asked for carers assess for my mum. Absolute nightmare. OA MH team have done 'their bit' but getting actual social care seems impossible. Was actually asked 'can she pay?' and when I explained no, was told it'll therefore be at least 8 weeked before she'll be allocated, let alone assessed!

Euphemia sorry to hear what your going through :(

My FiL has not arranged any power of attourney etc as was only diagnosed at Christmas. His wife (my MiL) died in July last year of the same cancer. My DH has various agreements and mandates with his bank account etc but this is limited even tho he is NOK.

Good luck over the next year xx

Just to update all - FiL has deteriorated significantly today and is now in bed and in and out of consciousness. Don't think it will be long.

Thank you so so much for all the support xxxx

Couldn't read and run...
You sound like a amazing person and Im so sorry that you have to deal with this. Please keep strong and don't forget about all these lovely mns are here to help.

Thanks - not amazing tho, not doing anything that most would do in this situation!

DH an DS home, we're all headed to hospice again in morning (if we're not called tonight - it's an hour and a half drive away) so will see what tomo brings.

Have bailed on work which I feel really guilty about - was meant to be interviewing potential new students - and have to go in on Thurs - was told I have no leave left due to MiL dying in July so winging it with AL and sick leave - just hate dumping on others :( but DH and DS come first right now.

Just so sad that half DS's family will have died within 7 months.

And yes MNers are bloody amazing and sanity saving!!

X

Thinking of you today. Hope it all for a ok and that you all find some peace.

HorribleDay speak to SS and remind them of their duty under Section 47 of the National Health Service and Community Care Act (NHSCCA) 1990 to provide a full assessment of your nan's situation.

If your mum is her substantive carer, she too has the right to a Carer's Assessment under some legislation whose name escapes me, I will look it up and get back to you.

As to work tell them you are taking it as unpaid compassionate leave, and if they make a fuss take it to the press.
Eat!
(hug)

Able all. Just spoke to SSagain - for the 7th time since my original request for asses and carers asses was made on 23rd Jan - told neither have been allocated a SW yet and as they have 'no staff' they have 'no idea' how long it will take. Reminded them of their statutory duty under the various acts (thanks for the PM cats) and was told 'we have no staff. What do you want me to do?'. Have requested their complaint form :(

Any suggestions for wording??
Now off the hospice to sit with FiL for the day, and prob into the night. Thinking not long but will see when we get there.

Work - humph... Will see when I get back what they say. HR have told me to go off sick (tho not in writing...!)

Thanks again all x

Just an quick update -

So FiL is still with us, against all odds, mind totally gone now. Hallucinating floridly, talking nonsense. Has morphine, midazolam and something for secretions in a syringe driver, some breakthrough pain. Semi conscious at times. Very hard to watch and distressing us all massively.

Work have been actually v good - they had a meeting about me on Fri without my knowledge (colleague, my manager an the head of division) - and decided that I'm contentious and lovely and could take whatever time I needed, and to go in when I need to, but to try to keep any student contact up (I'm a lecturer) - had lovely emails from all 3 telling me not to worry. Great to have the escape route of work but to be able to go and not worry too.

First Mothers Day without MiL so DH upset and stressed. My second Mothers Day and we're off to the crematorium now, then back to the hospice til evening. My first Mothers Day was 2 days after we found out MiL was dying :( - not a happy day at all. But it's just a day ultimately Abd we can have a family day when all this is over.

Hope you lovely ladies have a great day today (mums or not!) and thank you again for the support xx

Hope

Oh sounds like a horrible difficult day for you too then :( Hope you're able to have a relaxing evening.

I have a strange feeling it won't ve long now - after 5 days of acute confusion, we randomly had an hour of total lucidity today where FiL told us his wishes, that he knew he was going to die very soon, what he wanted us to do with his house, that he loved us all very much (most non-demonstrative man ever usually!) and that I had 'bought joy to the family' and was a 'lovely good girl' (letting the 'girl' go obviously :) )

Very bittersweet hour. Cried my eyes out during and haven't stopped yet.

Absolute ray of light in a dark time. DS also came with us today and cuddled up with Granddad in the bed - so sweet (and quietest I've seen him for days!!)

My thoughts go out to you love. You're having an awful time, but you seem to be rising to the challenge. I have the greatest respect for you. I've been there, lots of people have. But it's about you and your family. Hang on to the little things. Do what you need to do. Feel how you need to feel. It's all ok and you will be ok.

Thank you xx

Each person is different and can handle different amounts of stress. However it's fair to say that what you are going through is tough, draining and emotionally exhausting so I don't blame you for felling like you are going to crack.

So sorry love. May I suggest you call Age Concern to see what support they can offer your nan. You could also try the British Red Cross who give advice and support. If you haven't done so already you could talk to your GP who could write to social services, especially if you tell them how you feel. Take care.

Hi and thank you both.

I actually slept last night!! Think the hour of lucidity has left me feeling quite peaceful about FiL which is lovely and welcome.

My Nan's GP is strange - very supportive in most respects but said there's a huge crisis with funding and staffing in the local SS dept, which might be why their SW's are actively encouraging me to put in a formal written complaint. I've got the details for their overall chief exec and for their regional complaints team so going to write a long letter in the hope it may get me somewhere...! It may also help someone who is more vulnerable / doesn't have family support / doesn't know how to navigate their stupid systems get help too. Hate complaining but happy to in this case!!

Hi, just wondering how you were all getting on.

Thinking of you

Hi - you are lovely for thinking of us, thank you.

Amazingly FiL is still with us, which is both a blessing and a curse. Lots of pain, mostly very confused and incoherent, and sleepier. I arrived today and he told me that he knew today was the day - then half hour later had a seizure, which they treated conservatively with midazolam - an hour after that he was sat up having a cup of tea! Docs still saying any day but we've kind of stopped bracing ourselves for it if that makes sense?

I had hospital app this week for endometriosis (stage 4, had for 12 years, had loads of surgery and ongoing hormone treatment) - awaiting MRI and USS as has spread to bowel and other places, is deep in the tissues so will need laparotomy and bowel resection to stop the pain and bleeding. Without surgery will cause ongoing problems including possibilty of bowel blockage, with surgery there's a high chance of temporary colostomy. Not good news at all. So quite emotional about that too but can't deal with it until FiL has passed away and we have some headspace.

And next year we are SO going to win the lottery - karma etc!!

How are you?

Oh hon. Just read this thread right through, holding My breath be whole time. You are incredibly strong and brave. Cuddle your little man and hold on. It is a roller coaster, but you will get through it. Xx

Thank you for your very kind words - don't always feel strong or brave! DS def makes it all easier (tho not in a practical sense!) - he's at a lovely funny age minus (mostly) the power battles - the hospice nurses are great and regularly steal him for 20 mins or so - and then send him back with remnants of biscuit and, often, rolls of tape which he's obsessed with. He's a gem and luckily still v adaptable. And thank you again.